Patience is a gift that Hayley and I are not blessed with at the best of times. However, waiting for the results of an MRI scan add an extra level of urgency.....

The early part of the week was spent trying to work out how we were going to catch Gordon Brown mentioning Camille\\\'s name or at least letter in his NHS speech on Tuesday.....

The toll of the Three Peaks was evident as I crept downstairs on Monday morning. Step after step my legs felt like they were going to implode, creaking more than the floorboards.....

As the sun set over the flat fields of Suffolk, the waiting was over, the long hard struggle to get our fitness levels up and raise some serious funds for Camille\\\'s Appeal had come to an end.....

Like any other chemotherapy week, this one followed a similar pattern: the Monday morning visit from Mary, our local Outreach Sister who comes to our house to take Camiille\\\'s bloods.....

I\\\'m learning fast not to underestimate the chances of new pieces of news coming our way. Monday was our opportunity to ask both Mr Garnett and Amos any questions we had about the current position....

So, this week was the long one, the Chemotherapy dose that takes the whole week to get through with all the hydrating and flushing involved.

My job is going quite well since I started back a month or two ago. My role is one where I can control my own diary, so I do try to be present when Camille is going in to Addenbrookes....

Back when we suggested the Three Peak Challenge standing around our Addenbrooke\\\'s bed, I completely underestimated how little time I would have to train.....

A virus can come in many forms and with Camille\\\'s lack of immunity we have to be extra vigilant. It came as a major surprise that it was my laptop that became infected.....

On Monday morning I had the delightful task of going to Birmingham for a meeting. I was aware that Hayley was going to take Camille in to hospital....

As we had feared, Mr Garnett came to see us on Saturday morning to break it to use that we would be staying for at least another week.....

Many men would be bored of cold turkey and mash for the days following Christmas, but not I. In fact I bludgeoned through plates of the stuff with spoonfuls of Branston pickle...........

The days have merged into one another and now a week on from my last post, we are still resident at Addenbrooke’s Hospital, still a long way from home......

Never in my life has a week dragged on in the same way that this week has done. For ten days now, Camille has been practically restricted to her bed twenty four hours a day.......

After weeks confined to hospital ward it was really important that we could just get home and spend lots of time just being a normal family, and doing normal things in the house. So that’s exactly what we did, hardly going anywhere apart from work and school for Lucia.

Another week begins and another trip to Addenbrooke\\\'s for chemotherapy beckons.

We\\\'ve all heard of the dangers of the press and how a true story can be twisted or misstated into something a mile away from reality.

The week began with the thunderous footsteps of our eldest daughter crossing the landing into our bedroom, followed swiftly by the chirpy calls from our youngest daughter of “Daaaddddddyyyyyy”.

Even though Camille had gone in late for her chemotherapy due to an infection in the previous week, we were still on course to complete our fourth cycle.

There’s nothing quite like getting up at 5.00am on a Monday morning to drive the 220 miles to Bristol through rush hour M25.

Every weekend, Hayley and I look at our diaries for the coming week to decide how best to fit in work with chemotherapy and other miscellaneous hospital appointments. Of course this well oiled plan can be thrown completely off course by a nasty little infection requiring 48 hours in hospital.

It\\\'s very rare these days that we manage to have a straightforward or normal week, but looking back over the last seven days, it\\\'s probably been as normal as we\\\'ve had in some time.

A year ago I turned thirty and set upon the task of achieving ten challenges/ambitions before I reached my next birthday. In June 2009 my challenge came to an abrupt end when Camille was diagnosed with her brain tumour. For the purpose of “closure” I’d like to share with you how much I achieved:

As this week is a bit of a momentous week for Lucia and Camille, I thought I would take the strain off Martin and \\\'guest write\\\' the blog.  Unfortunately I do not have the wit of my husband, my thoughts on events in our lives tend to be a bit more emotional - and long, I apologise in advance for the length of this blog and suggest a cup of tea might be in order.

Saturday morning, once again Lucia was up with the birds, she was pretty stealthy as she jumped out of her top bunk and tippy toed over to our bedroom.   Martin quickly installed her in the living room with Peppa Pig on the TV then hopped back into bed hoping for 5 minutes before our littlest called for \\\'Daaaaaaaaddy\\\'.

There are times when you are a parent of a cancer patient that you have to sit back while your child is going through absolute hell, not able to affect their outcome in any way. Hayley and I felt like this in June and July when Camille was first diagnosed and again this week we’ve been faced with this horrible feeling.

Everybody is aware that brain tumours are extremely dangerous and your first assumption, like ours back in June last year, is that there is not much hope of survival. Hopefully, now that you have joined us on this journey over the last eleven months, you know that tumours are curable and that the doctors who have the task of looking after children like Camille, will do anything to not only make sure they survives, but also that they has the highest quality of life possible post treatment.

When I woke on Monday morning I expected my muscles to be throbbing after going on my first run in over a year. Actually, I was pleasantly surprised by my nimbleness as I waltzed down the stairs with the girls. It can be a real struggle to get in the frame of mind to step out onto the tarmac, but once you’ve done it and you’ve taken that rather long deep breath you feel pretty good.

Gradually now, day by day, we are getting closer to being able to continue with Camille’s treatment. The early part of this week Hayley spent in Addenbrooke’s with Camille undergoing numerous tests so that Amos can gain an understanding of how much the chemotherapy and the Klebsiella has affected her.

This week was always going to be an important point in Camille’s treatment as we were due to get on with her chemotherapy after her septic shock episode. Hayley and I actually seemed fairly confident when we arrived at Addenbrooke’s on Monday for Camille to have her kidney function test to see how quickly she will be able to clear the chemotherapy. This test is a standard procedure that takes place every eight weeks before each new course of chemotherapy starts; Camille gets injected with a radioactive fluid and then over four hours, she is monitored then over the following four hours to see the levels remaining at various stages.

After only a week on the new chemotherapy protocol, it seems that we have already managed to get into some sort of rhythm. In all fairness it’s not actually me that has anything to do with the rhythm as Hayley now tackles all of the hospital visits by herself with Camille, an arrangement that we just had to put into place after Camille’s septic shock episode. So now, three times a week, Camille goes to Addenbrooke’s for an hour to have her chemotherapy and then she is free to go until the next day. It might sound less restrictive than being an inpatient and in many ways it is, but when you are driving for twice as long as the treatment actually lasts, it is not a pleasant day.

It may well be hard to concentrate fully on the blog this week as my eyes flit between my laptop screen and the World Cup Final flashing in my peripheral vision. It’s a welcome break sitting down in front of the television after another hot day with the kids.

We all learn from our previous experiences and the events that have scared us down to the core of our bodies rarely happen again due to our ability to carefully avoid a repetition. So, this week saw Camille’s first infection since the septic shock episode in May, and this time we were quick, cautious and thorough.

We’ve all felt low from time to time; like there is nowhere to go, no point to trying and that no matter what you do, there will be no preventing the worst possible outcome for you in that situation. I say “we’ve all felt” it, but the chances are very few of us will have even scratched the service of what it is to feel so low, that even the smallest change in circumstances, or a high pressure incident, will be the straw that breaks the camel’s back and cause a full scale breakdown.

Some weeks fly by and some seem to last forever. This week has most definitely been the latter. Hayley had to take Camille in early this week for chemotherapy and spent all day at Addenbrooke’s with her. While I was at home working I had a text from my brother-in-law asking if there was any news on Hayley’s brother. He had been having headaches and was being sick over night so I assumed that was what Shane was asking.

Monday morning saw Hayley and I take Camille to Addenbrooke’s for her kidney test and MRI scan. On this occasion we had been dealt the perfect scenario where our scan would be viewed and discussed by Amos and Mr Garnett that very day and we would be able to stay on for a meeting in the afternoon. The morning and afternoon was like a military operation trying to get each element of the two tests organised in the correct order. The initial hiccup occurred as the doctors tried to get a cannula into Camille’s foot. She was beside herself with fear as the doctor poked and prodded her foot with the small needle.

After a week off chemotherapy and the meeting with Mr Garnett and Amos, Camille began her next cycle of chemotherapy this week and potentially the last before surgery. Each of these cycles lasts for four weeks which includes three consecutive weeks with three days of treatment in each week. The fourth week is a rest week so that Camille’s blood levels can recuperate before the next cycle.

Being rushed off our feet is a common occurrence for us since forming the Camille’s Appeal charity and of course since Camille was diagnosed. With hospital trips, infections, fundraising events, work and normal day to day life with two kids, it is very difficult to ever sit down and enjoy a relaxing book or watch TV without something drawing your attention away from the programme you are watching. This weekend was our big Bungee Fun Day weekend and once again we were bound to be exceptionally tired by the end of it.

The days and months have passed since Camille was diagnosed and chemotherapy commenced; now, as we move towards the end of this phase of treatment, something inside of me is almost longing for the security of week on week hospital visits. As the bank holiday weekend ended, we used the short working week to travel to Liverpool.

For some time, I have tried to maintain the blog on a weekly basis, but due to the significance of today’s meeting with Amos I thought it would be appropriate to update everybody on what was discussed.

With all that has been going on with Camille this week it would be easy to forget that her big sister was turning five. For a family like ours, no day is normal, but for your children and for each other we would love to make birthdays special. I was thankful to my boss for cancelling a meeting I had in Manchester scheduled for Lucia’s birthday, I can’t imagine being anywhere else than at home for her, but sometimes I am at the mercy of other people.

Camille has now been off the chemotherapy for over two weeks and although the hair is yet to start growing back, the sickness has generally subsided and she is able to put on some weight. The problem is that she isn’t just putting on weight because she will look better for it and it will build her strength up; she’s putting on weight in readiness for her operation. Everything we do at the moment is all leading up to the operation with no thoughts post September breaking through to our current thoughts.

As the weeks ticked along we have now reached the final few days before Camille goes to Alder Hey for her operation. All of this time it hasn’t seemed real and now all of a sudden we are just days from the most important moment of Camille’s treatment.

I hope that no one reading this week’s blog has to endure what we’ve been through in the last few days. I’ve been meaning to write a post for the last two days but with events unravelling before us, the only thing I have been able to do when I arrive back to my room is to sleep. To explain what has happened I’m going to go back to Tuesday where we had a final appointment at Addenbrooke’s.

If there was such a thing as a licence to be a parent, the last week should be the test to see whether you were fit and proper to take on such an important role. Every conceivable emotion has been pushed upon Hayley and I; and as we settle into another week and another major brain operation, I feel we have matured once again, even more than we have been required to do over the last sixteen months.

After the remarkable improvement that Camille had experienced last week we were pretty free to do what we wanted during this week. With the second of three operations scheduled for Thursday we wanted to get out of the hospital as much as possible knowing that the days following surgery were going to be tough for Camille exactly as they were two weeks prior.

Following the second operation we found that Camille had to go through many of the same challenges that she faced after her initial surgery. She didn’t seem in as much pain this time but certainly the control of her right eye, the affect of the anaesthetic and the constant itchiness of the healing scar were enough to make her week an unpleasant one.

Hayley and I are pretty hopeless at waiting for most things and at the moment we have to fight all of our natural instincts to chase by sitting tight and waiting for the answer from the Proton Therapy panel to see where we go from here. Of course the week began with Camille and Hayley stuck in a hospital room, but how many weeks over the last eighteen months haven’t?

Without having heard anything of any note from Addenbrooke’s since we returned from Alder Hey, we had no clue as to whether the application for Proton Therapy had gone off to the NHS Proton Therapy panel. As far as we were aware, this was the next stage of Camille’s treatment and we were led to believe that Camille was pretty much a certainty to be accepted and treated in the US.

This week was the week that Camille started back on chemotherapy, a week that we didn’t want to come around again, but nonetheless, something that we knew had to happen. The thing is, life isn’t as simple as we’d like, it’s almost like somebody, somewhere, enjoys making life as complicated as possible.

It’s now only two weeks since Camille started back onto the chemotherapy, but already we’ve slipped back into the old routine with all of the added complications that come along with an immune suppressed child.

The week started with Camille and Hayley in hospital after a weekend of dropping in and out of the ward to get regular doses of antibiotics. The hospital couldn’t narrow down what had caused the problem in the previous week, but with Lucia, Hayley and myself all falling foul of the sniffles, or in my case “manfluenza”, I think it was fairly obvious.

Camille\\\'s tightrope continued throughout the early part of the week. Her CRP levels were indicating that she had an infection, yet her temperature had remained normal. With our Christmas Ball and a trip to Lapland UK coming up we really wanted her to keep at bay whatever was threatening.

Brace yourself; do not get too excited, but this week has probably been the dullest week you will ever experience. There’s been no chemotherapy, Lucia’s been at school, I’ve had a busy week at work and Hayley tumbled down the stairs on everything apart from her feet; the cornerstone to any normal week in our household.

With Florida just around the corner, potentially before I return to work after the Christmas break, I had a manic run up to Christmas with a diary so packed with appointments that it put the cram into Cramberry Sauce [sic]. It was quite a relief that the last two days before I broke up for Christmas was spent at home catching up on paperwork and updating all of my records so my colleagues can understand what’s going on while I’m away.

As Hayley pointed out last week, each of my most recent blog posts have begun with the phrase “With Florida just around the corner”; I’m afraid today I cannot offer any further update to when we may be leaving.

Weeks of waiting and then all of a sudden we are dragged across the Atlantic to our new base for Camille’s last stage of treatment, Proton Therapy. We knew it was coming and everything was in place but even with all the preparation in the world, sometimes you can still be surprised.

It seems only appropriate that after missing my first week since I began writing the blog nearly two years ago, I should apologise. The reason is an honest one; as we had a week free in Florida we drove down to Orlando and visited Mickey Mouse and his friends in Orlando. You may be thinking that “they must have internet at Disney”. Well yes they do, but as Mickey Mouse stings you for every penny you have, I refused to pay the extortionate fees for our big-eared “pal” to switch the switch that connects me to the web. Now that I am free to breathe oxygen without fear of a bill, I’ll revisit the last two weeks using the power of sub-headings.

Within hours of writing last week’s blog, Hayley was on the phone with the very helpful (yet very systematic) Virgin Atlantic team, booking our flights home. Within twenty-four hours of writing the blog, we were sitting in our seats on the 19.50 flight back to London Gatwick. Our week has moved extremely quickly, at times too quickly for my liking.

After just a week at home we were heading back up to Alder Hey, just over three months since we saw our little girl battle through the recovery of two major brain tumour resections.

Ok, so he doesn’t know it yet.  But I am writing the blog this week, it’s been almost a year and let’s face it, a change is as good as a rest.

Soon after writing last week’s blog, Hayley loaded Camille into the car once again and made the 250 mile trip up to Alder Hey for her stitches to be removed and a final CT scan to ensure that Camille was fine to fly. The plan was that Mr Mallucci would arrive at the hospital around lunch time to take a look at that scar and scans and give his approval; I would then book the flights.

After last week’s bombshell that treatment was not due to start until the 1^st March, we had another one of these “filler” weeks to try and get through without the kids becoming too bored and too tetchy.

This is the week that we finally got Camille started with the long awaited Proton Therapy, the week that we have been building towards since Mr Mallucci came out of the operating theatre in mid-October and said that she wouldn’t need the third surgery that was originally planned. Well, as we all know, things haven’t run as smoothly as we would have liked and the third operation did end up taking place in an impromptu manner; nevertheless, we’ve made it, finally.

Sunday night and all seems a little more normal in Jacksonville than the last week would have suggested. Camille’s second week of treatment is over with and after last weekend’s scare about her shunt, we’ve been glad to have our little girl back, even if it has come at a price, the re-introduction of her NG Tube.

We are now truly in the groove over in Jacksonville, with treatments flying by and the treatment plan clear in our minds. We’ve also got pretty use to life around Southside and the daily routine of going into the Proton institute, as well as the great weather that has welcomed us since our return to Florida in late February. It should have been an easy week but again it was a mixed bag.

What’s the one thing we British should have learnt over past twenty years? That’s right; when in the sun ensure you cover yourselves suitably in sun tan lotion to avoid burning your skin. Six weeks into our Florida stay and I am finally moving like C3PO whilst lighting up any room with my red raw back and belly. You may have noticed that I didn’t mention my shoulders? That’s because I was clever enough to smear factor 70 over the very top of my torso, so now I am left with two white stripes across the top like a proud military officer (that’s if they have stripes on the shoulders, I don’t know).

It’s amazing how much can change in just ten minutes. Today, as Hayley had her Mother’s Day sunbathe, Camille went from a tentative stroller to a confident walker. This could be a major change in our lives; with Camille walking she can hopefully gain some more independence, play with her cousins and friends and get things for herself, probably sparing a lot of the frustrations that make her angry each and every day. Today could be a major turning point for Camille; we all hope so.

The curtains flapped violently into the bedroom, the apartment resonated with a howl that haunted my early morning slumber. Slowly I woke realising that window ledge ornaments were about to fly off into the room and crash onto the floor. I hopped up to close the bathroom window first and then all other gaps that led to the outside world. We were in the middle of our first Florida tornado and the girls slept through the whole thing.

At 8.30am this morning, the solid thud of tyre on tarmac meant only one thing, our journey in Jacksonville, Florida was over and we were back in Blighty. We have pretty much been resident in the United States since early January and if we are all completely honest, I think we are going to miss the place and the people.

You may be wondering why the blog is a little late this week. Well, I have been a little forgetful if I am completely honest, but now that I am back at work, my mind is filled with lots of useless facts that have no bearing on my home life.

The thing that I have been most concerned about since we landed on the tarmac of Gatwick Airport two weeks ago was Camille starting pre-school and how she would manage. On Wednesday of this week, the day finally came around for her to strap on her rucksack and go to the pre-school that Lucia had attended just a year ago.

Can you imagine having the sole wish to be able to have a normal, run of the mill, boring week. After two years of an intense schedule with no pattern, reason or way out, we finally had one of those weeks. It’s great for us as a family to be able to report this ordinary occurrence, but for the average reader out there, you will be forgiven for nodding off.

Anyone who has regularly kept up to date with this blog will know how hard our journey has been.  Camille has had three major brain tumour resections, over forty doses of chemotherapy, thirty-three rounds of radiotherapy, numerous shunt operations, septic shock, many, many hospitalised infections, acute renal failure, three Hickman line insertions....I honestly could go on, the list of procedures Camille has endured and suffered seems endless, the one statistic that astounds me is that she has had around sixty general anaesthetics in the past twenty-three months. 

Last Sunday night when I sat down to type the week’s blog I remembered what a couple of friends had said that week, that it was about time that Hayley guest blogged once again. I looked over the living room and suggested that very thing to Hayley. Her reply was that she had already started doing one and she sent me over the paragraphs that she had completed. Hayley wanted me to finish it off but after reading the four or so paragraphs there was no way that I was going to butcher what is a wonderful insight into Hayley and Camille’s life at the moment.

On a number of occasions I have been slightly tardy with my blog entry and for that I apologise; this week the accumulation of exam revision and a stag weekend in Brussels have left me floundering for time to type the blog but thankfully, as I fight the nausea of the “wobbly” train to London, an opportunity has presented itself.

The time has finally come for Camille’s first post treatment scan and as we prepare for tomorrow and the possibility of days without knowing either way what the situation is, we sit in the doom and gloom of the horrible June showers waiting for our lives to be laid out in front of us.

The day of Camille’s first scan post treatment arrived early in the week and although we had stumbled towards this date without the level of anguish that we had expected, it was an extremely nervous time.

I am in a reflective mood this week as we had the most wonderful weekend, our very close friends and Martin’s cousin, Stevie and Clare got married in Newmarket, it was a wonderful and beautiful wedding and Lucia and Camille were stunning as bridesmaids.  Given the amazing news we had last week, I felt many emotions. 

It’s always a difficult challenge following Hayley’s guest blogs and my struggle with this week’s blog has caused me to be a few days late with this post. Hayley’s emotional statement last week is still a very good indication of what goes through her mind on a day to day basis; she’s still haunted by the events of the past two years, and last week’s post happened to coincide with the two year anniversary of that day when Camille was diagnosed.

Camille is going from strength to strength now that she has been able to get back to a normal life like other children her age; step by step, tube by tube, we are starting to make up a little lost ground from the last two years.

We’d been in contact with the wonderful Make a Wish charity for some time about giving Camille that wonderful experience that would help get over the last two years of hurt and fear. Last weekend was the day where she finally got to meet …….”Oh Mr Tumble!”

It’s been a few weeks since I last updated everybody with how Camille is progressing. The truth is, thankfully, we are undergoing a period of normality and the frequency of “News” is decreasing to low if not boring levels. However, we are now just a couple of weeks away from Camille’s first day at school and the next phase in her life.

The twilight of the summer holidays has smothered us; in just a few days our little chickens will be shuffling off to their classroom from the rowdy playground for a new school year and for Camille it will be a step into a new frontier.

The smell of fresh plimsolls, the sound of children risking serious injury, sprinting around a packed playground, the air of tension of parents sending their children off to school following a long and arduous summer; the first day of school is nerve-racking for anybody, especially for Camille who has missed so much in her short life to date.

The gaps between scans seem to last forever, but we know that eventually the next one will come around. This week will see Camille go for her second scan since completing treatment and although we are well over two years since that first diagnosis, the anxiety leading to this scan has probably been as bad as it ever has.

It’s been a really important two weeks for Camille and the family so it’s about time I updated you with what has been happening. Let me cast our minds back two weeks ago today; we were readying ourselves for Camille’s second post treatment scan and the one that is just enough time for things to begin to settle down.

Hayley and I ran into the lovely Sally Warden earlier today and the blog came up in conversation. It is funny how the committed few of you out there still log-in to the website on a Sunday night to read the latest update on Camille’s progress. Maybe I should still try to extract a weekly summary of our activity even if it does run the risk of boring the pants off of all of you. Normality for us is great, but it doesn’t make great reading.

Have you ever wanted to know more about upcoming fundraising events?  Maybe you\\\'re keen to know more about the outcome of past events or even why and how some supporters go that extra mile to set up their own fundraising activity.  The purpose of this new section is to tell you just that.

A group students from West Suffolk College who have decided to record and release a Charity Christmas single. This song is called ‘This Winter’ and was produced to raise funds and awareness for Camille\\\'s Appeal.

It’s been quite some time since I last posted a blog entry here on the Camille’s Appeal website. In fact, it was Halloween when I last found a few moments to let you know what has been going on in our lives. The truth of it all is that Camille has been doing well and to update you every week with a short paragraph explaining that there is no change, wouldn’t be useful for anyone.

Important dates and deadlines for Camille\'s Appeal fundraising events in February 

My head is swimming; my eyelids are drooping towards my ruddy cheeks quicker than the train I am travelling on towards London. Yes, the initial two months of a new born baby leave you in no doubt that sleep is an important element to anyone’s day.

OK, so I’m already a day late from my fortnightly pledge to update the blog. I will of course protest that this is not my fault but the introduction of our wee little man who does tend to spend most of the evening deciding whether he is tired, hungry, happy or a mixture of the three. In fact, I sit here now at 9.00pm with a jolly little boy laying next to me in his cot supposedly trying to go to sleep. He looks more likely to attempt a cartwheel at this moment in time but hopefully the rat ta tat tat of my keyboard will be sufficient enough to send him into an administration induced slumber. He nearly didn’t make it this far.

It is Murphy’s Law that as the notification letter for Camille’s next scan hits our door mat; Camille becomes ill, complaining of headaches and lethargy. So, when the thermometer revealed that Camille had a temperature up towards 38.0c, the relief was plain to see.

It’s funny how things change over the course of a couple of weeks. The ebbs and flows of being a parent are challenging at the best of times and I think that being a parent of an oncology child just makes these waves resonate that little bit more.

The last two weeks have seen the introduction of a major step in Camille’s rehabilitation as well as me being able to face up to some ghosts from three years ago by once again taking on the London Marathon.  To top it all off we had a very spotty, special birthday to arrange.

It’s been some time since I last blogged about Camille and her progress post treatment; it seemed that back in May, updates were becoming more and more irregular and it was a good time to take a break. However, eight months is a long time and lots of significant events can take place, especially when trying to overcome the effects of a brain tumour.

85 miles and \\\"Two seasons in one day!\\\"

Well this weekend was a milestone for me. After managing a 60 mile ride last weekend I planned to try 85 miles and add some serious climbing by going up into Exmoor (also part of day 8 of the ride itself). Knowing this was going to be a biggie I decided to add some motivation by contacting one of the other riders who lives in North Devon and arranging to meet him at 9am at the bottom of the climb up to Exmoor.

Fundraise for Camille\\\'s Appeal by selling your unwanted items.

Had a great 60 mile ride onto Exmoor yesterday but this time with other people (what a difference some company makes!). Met up with Thor, Richard and Lauren who are all from Devon and also doing the ride with us in June, and took on some serious climbing on Exmoor from South Molton.